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Mitrofanoff Leakage

Hey,

I just registered for this, and while I searched the forum have not really found anything that relates to it 100%. Thank you for helping me out.

So, since I was 12 I had a mitrofanoff (augmented bladder, with large intestine) and use a 12 Tiemann catheter.
I have a little-bit of leakage from the stoma (appendix to the bladder) and would like to know what are my options. It has been going on for quite a while now, and while it does not interfere much with my everyday life, it ruins my shirts and T-shirts sometimes (I have to wear padding or can't wear bright colors) and can cause discomfort for anyone being with me.

Is there a possibility that I might not need to have a surgery? I'd like to resolve it without as much interference as possible.

Could it be caused by the following?
- Tiemann catheter, hurting the appendix.
- Excessive consumption of coffee.

Also, besides washing out the bladder with solution, what might reduce the amount of mucus? Had a stone removal 2 months ago, and don't want to relive that. The docs said I should irrigate every 3 days, is that plausible or could I make it once a week?

Sorry for the barrage of questions, and thank you very much for your help.

I just registered for this, and while I searched the forum have not really found anything that relates to it 100%. Thank you for helping me out.

So, since I was 12 I had a mitrofanoff (augmented bladder, with large intestine) and use a 12 Tiemann catheter.
I have a little-bit of leakage from the stoma (appendix to the bladder) and would like to know what are my options. It has been going on for quite a while now, and while it does not interfere much with my everyday life, it ruins my shirts and T-shirts sometimes (I have to wear padding or can't wear bright colors) and can cause discomfort for anyone being with me.

Is there a possibility that I might not need to have a surgery? I'd like to resolve it without as much interference as possible.
?
Could it be caused by the following?
- Tiemann catheter, hurting the appendix.
- Excessive consumption of coffee.

Also, besides washing out the bladder with solution, what might reduce the amount of mucus? Had a stone removal 2 months ago, and don't want to relive that. The docs said I should irrigate every 3 days, is that plausible or could I make it once a week?

Sorry for the barrage of questions, and thank you very much for your help.

Caffeine can cause bladder spasm for some. Try cutting back or cutting out your caffeine intake. Have you had recent urodynamics? Your augmentation may have shrunk and caused you to loose capacity. Why do you use a Tiemann catheter? Generally that is not recommended for Mitrofanoff tracts. You need to see a good urologist with experience in Mitrofanoffs. You may need a stoma/tract revision.

Caffeine can cause bladder spasm for some. Try cutting back or cutting out your caffeine intake. Have you had recent urodynamics? Your augmentation may have shrunk and caused you to loose capacity. Why do you use a Tiemann catheter? Generally that is not recommended for Mitrofanoff tracts. You need to see a good urologist with experience in Mitrofanoffs. You may need a stoma/tract revision.

(KLD)

Thank you! Today it was considerably better as I decreased my caffeine intake, it may have been mostly related to that, but there is still minor leakage. I had urodynamics about 3-4 months ago and everything was perfect.

In your other post, if you are referring to Urinary Tract Infection, I have never had any. I use Tiemann because when I was younger I had complications (I did not go when I should have, thus was harder to insert...) and it resolved that issue. Since then I use Tiemann only, Nelaton just occasionally. I will look for a urologist with experience in this field. Could you tell me what do you mean by stoma/tract revision? Catheter-wise, do you have any recommendations?
Thank you.

I've had the same leakage issue with my mitrofanoff/bladder augmentation for about 10 years now. Have you had a urodynamics study done recently? Your bladder capacity may be lower than it should be, or you might have high pressure in your bladder when it fills.

I've found that getting Botox injections in my bladder every 4-6 months really helps with the leaking. The last time I had injections, my urologist also injected a bulking agent (no idea what it's called) around the mitrofanoff stoma and I've had no leaking since.

I have active contractile voiding out of my stoma when I hit certain volumes. My augmentation was supposed to take care of this but I've had active spontaneous voiding very early on after the operation. The surgeon never acknowledged why this was still a problem but I think he knew the outcome was not ideal. I get Botox once per year. I cannot deal with getting a cystoscope, anesthesia, and postoperative bleeding (more or less problematic) twice per year. I do instill 30 mL of saline with a crushed 5 mg oxybutynin pill to dampen down overnight contractions.

I do not work anymore but if I did it would be a nightmare with my bladder the way it is. Staying safely hydrated would cause leakage almost on a daily basis.

I also produce a lot of mucus. I irrigate twice per day with saline. Once per day after saline irrigation I instill 40 mL of Hydrocleanse for three minutes. I find it often loosens up mucus that saline didn't. It also helps keep the bladder environment somewhat cleaner bacterially.